The charity’s latest report found that just three in 10 patients believe their family doctors are well informed about their illness.

“There is still a long way to go in providing targeted health and social care services”
Sonya Chowdhury​

Of 2,000 sufferers surveyed, half said they had not been to a specialist clinic in the past five years.

And 80% said they had not had a social care assessment in the same time frame.

Action for ME chief executive Sonya Chowdhury said: “Even though we know from the people with ME/CFS who contact us every day about the lack of services or support they have access to, these results are still shocking.

“We know that there are many brilliant and supportive professionals working with people with ME/CFS out there. But there is still a long way to go in providing targeted health and social care services to meet the complex needs of people with ME/CFS, particularly those who are more severely affected.”

The NHS said that CFS or ME causes persistent exhaustion that affects everyday life and doesn’t go away with sleep or rest.

Around 250,000 people in the UK are thought to be affected by the condition.

The problem is that AfME considers GET and CBT to be the treatment recommended, the "specialist centres" are a joke.
As is the headline. But I don't reckon editors had anything to do with the headline. I personally suspect that's exactly how it was written.
Time for AfME to stand down.
not "time for words" or "time for action" or "time to deliver"...

There's plenty of quackery about for those who don't mind being misled about the efficacy of CBT and GET, and Action for ME wants more?

Until the results from PACE are released in the manner laid out in the trial's protocol, and it's recognised that misleading patients about the efficacy of treatments for CFS is unacceptable, increasing 'awareness' in the UK is likely to do more harm than good for patients imo.

Of 2,000 sufferers surveyed, half said they had not been to a specialist clinic in the past five years.

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How did they even manage that? I wasn't aware that they had any publicly available ME specialist clinics in the UK. Just some psychological services that are either a bit supportive or completely destructive.

People told us they were mildly (36%), moderately (42%) or severely (22%) affected by M.E./CFS, and nearly two-thirds (58%) had experienced symptoms for 10 years or more.

Around 90% of people with M.E./CFS had stopped or reduced paid work and social contact, while half had reduced or lost capacity to drive and a quarter were no longer able to leave their home independently.

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Specialist NHS coverage for M.E./CFS is patchy, with several areas not served at all, particularly in Scotland, Wales and Northern Ireland. More than half of people with M.E./CFS (54%) had not attended an NHS M.E./CFS clinic at all in the past five years.

About 40% of people who had attended an NHS M.E./CFS clinic rated it as good or very good; a third rated it as poor or very poor.

NHS consultants (ie. not part of a specialist M.E./CFS service) rated as the most well-informed were occupational therapists, immunologists and paediatricians. Those rated as providing the best service were occupational therapists, immunologists and clinical psychologists.

Two thirds of people with M.E./CFS had used pacing as to help them manage their symptoms, a 10% increase on our 2008 survey results.

A third of people with M.E./CFS had tried cognitive behaviour therapy; half said they found it helpful or very helpful, while around one in 10 said it made them a bit or much worse.

Around one in five people with M.E/CFS had tried graded exercise therapy; a third said they found it helpful or very helpful, while nearly half said it made them a bit or much worse.

People with M.E./CFS told us the most helpful complementary approach they had tried for symptom management was meditation/mindfulness, followed by yoga and massage.

More than half were not offered any follow-up NHS support at all in addition to their chosen treatment.

AfME seem to have hijacked awareness week in order to promote CBT and GET.

"Brilliant and supportive professionals"? What planet does this woman live on?

We have biased and cruel professionals who torture us with graded exercise and cognitive behavioural therapy, refuse to believe we are physically ill, refuse us the tests that would prove we are, refuse to read the research that proves we are, and who leave us to rot for decades after their nonsense has made us permanently relapse.

this has long been how the British security services and bureaucracy hijacked any group, be it genuine political ones or terroirsts, even charities, that are "against the perceived interests of the Establishment"

they put THEIR people in positions of power and influence, and give it nudges, and ensure "outsiders" get no chance at positions of influence
think I'm kidding? go study history.
AfME is a stooge for the UK's sick, evil system

folk don't realize the power of the "old school tie" system etc in the UK

During World War 2, the British international intelligence agency was and still is MI6 also known as SIS, though more in conjunction with their MI5 "inland" counterparts at that time, huge rivalry between them)
SOE (special operations executive) was setup in WW2 to oversee and commit sabotage, assassinations and other dirty skulduggery on the enemy.

Now, MI6 didn't like this, they felt SOE were amateurs, outsiders and causing grief for their systems etc
so, some gits in MI6 had SOE agents betrayed to the Germans etc, or arrested even convicted on trumped up charges at home. Yeah that really happened.

moral of the story being to show how damn small minded, petty, arrogant, vindictive and internecine those scumbags are.
More dirty deeds are sorted out on golf courses and in private clubs than you'd believe, such as THREE bloody wars in the Gulf and associated cover ups, giving foreign dictators biological and chemical weapons and other crap.
hence the cover up on Gulf War Syndrome. they don't want it know some of the SCUDs airburst and were loaded with bio chem agents we (US and UK) had given Saddam
so, you get your "chummies" to take over GWS charities or investigations and manoeuvre it into the back of the cupboard...so it al goes away....
just like they did with the nuclear test veterans of the 50s, and poor sods they injected with nerve gas claiming it was "just common cold cure tests"

I've just scanned the report, for interest, and it looks very good to me. AfME don't promote any particular approach in the report, just state the facts from their respondents. It is interesting to see that GAT & GET are the only treatments tried that resulted in more people deteriorating than improving.

I don't live in the UK, although I am British, so I can't really comment on the positions of the various ME organisations. I have experienced doctors telling me that it's a psychological illness, and that I should do GET here in NZ.

I have been thinking about the issue of lobbying and pushing for change, and was very interested to read Ian Lipkin's comments on the recent interview. It just seems to me that all of us need to work together, and find a way through this mess. Sure, we will have differences in opinions and we will disagree vehemently with some people, who choose to pursue the psychiatric path, but unless we are prepared to put aside some of the history and move on more constructively, we won't and perhaps can't get to where we need to be.

@daisybell, Lipkin did not get a good review because "CFS is psychiatric". There can be no compromise with psychogenic medicine while this nonsense continues. However we do need to organize more. I cannot see that happening around broad agendas, there is too much conflict. It is happening right now around tightly focused goals though.

There is no tangible evidence that any psychogenic claim is right. None. Not for any psychogenic disorder. They have been proven wrong again and again though: diabetes, rheumatoid arthritis, Lupus, MS, gastric ulcers etc. Now we have concrete, tangible, replicable evidence of severe pathophysiology in ME. How long will it take them to wake up?

A third of people with M.E./CFS had tried cognitive behaviour therapy; half said they found it helpful or very helpful, while around one in 10 said it made them a bit or much worse.

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My question is can this be considered accurate for the wider ME community? Its vastly different results than we have seen before, and maybe someone should look at the specific questions, plus the likely patient cohort. Most ME patients I know will have nothing to do with CBT or GET, and that includes UK patients. Those who do probably have chronic fatigue, but how likely is it they have ME? Also most ME patients I know in the UK have given up on AfME. Who is left?

Yet when push came to shove in the PACE trial, even using Oxford criteria, the results were pathetic. No substantive objective improvement was seen. The tiny (non-significant?) improvement in the 6MWT was so small, and resulted in such a bad final outcome, that it is ludicrous to claim it counts. The "after" patients with mild CFS still score worse than severe MS patients, or class 3 heart failure. Is that recovery?

There have been three large government reviews as well, with the outcome that there is no improvement. Now we also know the pathophysiology predicts not only no improvement, but a worsening of function given the kinds of treatments typically used in GET.

@daisybell, Lipkin did not get a good review because "CFS is psychiatric". There can be no compromise with psychogenic medicine while this nonsense continues. However we do need to organize more. I cannot see that happening around broad agendas, there is too much conflict. It is happening right now around tightly focused goals though.

There is no tangible evidence that any psychogenic claim is right. None. Not for any psychogenic disorder. They have been proven wrong again and again though: diabetes, rheumatoid arthritis, Lupus, MS, gastric ulcers etc. Now we have concrete, tangible, replicable evidence of severe pathophysiology in ME. How long will it take them to wake up?

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1) When the evil, wicked, stupid bastards die off!
as said often before, I love science but fact is as a wise man once said:

this has been proven time after time after time
Science NOT "scientific", lol
The Scientific Method is valid, but "science" is a Human cultural endeavour, and Humans in groups become wilfully bigotted, stupid and corrupt, see many psychological studies and history proving this.

2) Not until a psychiatrist is successfully prosecuted for torture, abuse or negligent homicide of an ME patient, will they be FORCED to change

3) Mass extermination of the Human Race in upcoming wars as before in such things, cleanse the slate to allow fresh thinking as I item #1 above.

Beyond fed up that in general Humanity only moves on by utter horrors driving it home that things must change :/

A third of people with M.E./CFS had tried cognitive behaviour therapy; half said they found it helpful or very helpful, while around one in 10 said it made them a bit or much worse.

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My question is can this be considered accurate for the wider ME community?

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My question is: what did they find CBT to help them with? To be more functional, less disabled or to feel like someone is finally interested in their illness and hence helping to lessen the non-physical burden of illness (provided it was the non-destructive type of CBT).

The 6MWT did reach statistical significance in the GET arm, but only just, and failed to reach the more important 'real world' standard of clinical significance (ie clinically useful difference).

Yep, it was pathetic. A grotesque corruption of the whole notion of 'therapeutic benefit'.

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I put a question mark because my brain was fried and I wasn't sure. To my understanding the improvement was small enough to be due entirely to bias, and not improvement at all. Small effect sizes might reach significance but can easily be due to biasing effects. Significance only addresses the issue of probability, or how reliable the result is in a probabilistic sense. Highly biased results tend to be highly significant.